Hi Loulou thanks for reply. You say your symptoms improved was that with medication or naturally? What meds have you been on?
I have horrific throbbing burning pain and nerves fire off big time all over my body it’s like electrical shooting pains I was trialled on a number of things up until seven years ago when I got ivig it doesnt take pain away completely but dampened it down by about 70% which let me have a life. My consultant(of two years) is not very supportive and said I’m psychologically dependant on ivig which is a lot of rubbish he said I should never have had it in the first place why then did nothing help long before I had ever heard of ivig. As far as I’m aware there are only two of us in Scotland with this diagnosis the other person has a different consultant and was restarted on treatment seven months ago and gets reviews every three months and doesn’t even get the same relief as I do. You can see the predicament I’m in and grasping at straws to see if there is anything else anyone knows of that I could try, if I had a supportive consultant I don’t think I would have a problem. Thanks again for reply.

SW xx